The room may fall silent, but that damning statement echoes all around me. Finally, I ask, “What about college?”
“Don’t worry. We’ll make even more adjustments,” says Mom quickly.
Dad agrees, “Absolutely. Immediately. Whatever it takes.”
Along with Dr. Anderson, Lee & Li begin to formulate the new Viola Wynne Li crisis plan, but I sink back onto the examination table, unhearing. Say good-bye to Abu Dhabi, desert land of perpetual sunshine. Even wearing my most broken-in pair of trail running shoes with thick soles designed for the roughest terrain, I cannot outrun this avalanche that’s burying my life.
My bedroom is darker than my thoughts. I can’t see anything—not my blisters, not my hands, not my future. Frowning, I flick on the overhead light. My room remains a stubborn black. I fumble for the doorknob and widen the door so light from the hallway seeps into my room. When I look up at my ceiling, I identify the problem: There is no light bulb, just an empty socket.
Without knowing it, I have become the Sleeping Beauty of light bulbs, which have all been banished from this Kingdom of Crazy.
I’d bellow, Mom! Dad! But then they’d tear into my room, where we’d have the dismal discussion I don’t want to have—them explaining, explaining, explaining why cave conditions are necessary—when all I want to know is why the hell I have solar urticaria and PMLE. I yank aside the curtains to find cardboard taped over the windowpanes.
I am serious.
Eight panes of glass, eight perfectly cut pieces of cardboard.
I rip off one piece of cardboard to give just enough light to read and settle in the shadows on my floor. Our eco-green house may be an even and pleasant sixty-eight degrees, but I am freezing. I tug the handwoven throw blanket off my bed, brought back from Auntie Ruth’s mission trip to Guatemala a couple of summers ago. And then I research.
Greetings and welcome, Viola Wynne Li!
Congratulations! Out of the 7.12 billion inhabitants on Earth, you have been invited to join the rarefied group of approximately one hundred known and verified cases of solar urticaria throughout the entire history of humanity. Even more unusual, you got a double dose of photosensitivity with your polymorphous light eruption. Yay, you!
Membership to this highly selective society of the Dwellers of the Dark includes the following exclusive, lifetime benefits:
You get to take part in a mystery called the Great Unknown. Because. The cause of solar urticaria: Unknown! The cure for solar urticaria: Unknown! How long will it take you to break out in hives? A few minutes? A little longer? Unknown!
Your skin is going to swell into hives every time you step into the natural sun or sit under a light source that emits ultraviolet radiation.
Sometimes the swelling / reddening / hiving will go away in a couple of minutes. And if it doesn’t, it’ll probably be painful!
And as an extra-special bonus, you’ll get your fair share of blisters, too, thanks to your PMLE!
You may opt to take preventative measures with treatments like phototherapy (we’ll blast you for longer and longer amounts of time to thicken up that skin of yours, but then you run the risk of getting skin cancer), photochemotherapy (drugs may help, but then you run the risk of getting other cancers), or our personal favorite, plasmapheresis. (Where your plasma is removed, treated, and reinserted into your blood. Seriously.) In all cases, your desensitization to the sun will be short-lived. So lucky you, you get to repeat these nonlasting treatments over and over and over again.
The best course of action: Avoid any and all contact with light.
And remember, all members of this ultraselective society get to lead (severely impaired) lives unless, of course, you die.
Good luck to you, and welcome again!
It’s four thirty in the morning by the time I’m done learning all I don’t want to know about my condition. Sleep is as impossible as hope, even after a long text exchange with Aminta, who is just trying to support me with her every suggestion. I know better, but I become one of those no-no-no clients who hate every idea and find fault with every recommendation my parents propose.
Aminta: You can go on night walks with rangers to search for owls.
Me: Since when have I ever searched for owls?
Aminta: At least you can swim in a rash guard, pants, and a hat, right?
Me: While everyone else is in a cute bikini? Even the pregnant moms? No.
Irritated at myself, I force lightheartedness back into my answers.
Aminta: At least you can run in the dark.
Me: I can.
The truth is: I might not be able to run in the broad daylight now, but no one said anything about running in the dark. However much I’m supposed to impose lights-out martial law in my life, I am not about to go silently into a severely limited life.
One headlamp, a jog bra, and I am out of here. At my closet, though, I stagger back, shocked. While I was at school, my wardrobe became a dead zone of fashion, a place where cute goes to die. My flowy tank tops, V-neck T-shirts, anything and everything that might show a microscopic amount of skin is gone. I push back the (teal! magenta! aqua blue!) long-sleeved, button-down shirts, including an entire zip code of turtlenecks, all with their tags still on: UPF 50+ for sun protection. Of course they provide sun protection. No one would be caught dead outside in them.
A radioactive pink tunic (a tunic!) actually hangs front and center in my closet. The chances of Mom allowing herself to be seen in any of this in public are nil to none. So why would I? I yank the offending tunic off its hanger, wad up the diaphanous fabric in my hands, and lob it at my floor. Even that denies me any satisfaction: It floats down, a bare whisper of a protest.
I can’t stand being stuck inside for another minute: not in my room, the victim of Project Uglification, not in my home with parents who are mounting a war I want to fight on my own terms, and especially not in my head, where the diagnosis slithers around, preparing for a fatal strike.
Lo and behold, I have an entire closet of sun-protecting clothes.
Why, thank you, Mom and Dad. A test run outside in my new wardrobe sounds like a fine idea. We’re hours before sunrise, and look how overprepared I will be.
I shove aside shirt after shirt, and finally choose a long-sleeved black rash guard, which is better than anything else, even if it’ll cover my Firefly lariat. When I open my bureau to rummage for my headlamp from various school camping trips, my hands skim over the khaki trekking shirt I wore in Tanzania.
“Welcome to the land of the sun,” Auntie Ruth had announced as soon as we stepped out of the tiny twelve-seater prop plane. Her head tilted back, black hair gleaming, and her arms spread wide like she wanted to scoop up the entire sky and place it in my arms so that I could carry a piece of the sun with me wherever I went.
Little did we know, I would.
…
I rip the cardboard covering off the rest of my windowpanes and shove the window wide open. Cold air blows in. It’s a small four-foot drop to the ground, yet when I land, I’m all newborn giraffe, ungainly on my feet. I flail for the flimsy branch of the Japanese maple, which doesn’t stabilize me, and land on my rear. Of course I do. It stings. Of course it does. I rub my bottom cautiously, not wanting to inflame that area more than the phototest already has. After I shove the side gate open, I dart down the driveway, hugging the shadows. A quick glance at the front door confirms that all is clear, even though I’m half expecting the parent patrol to stop my escape.
This is the first time in my entire life that I have snuck out. I don’t feel so much as a weak flicker of guilt.
City running has never had any appeal for me with its asphalt roads and cement sidewalks, random garbage blowing around, piles of dog poop here and there. Then there’s the rumble of cars, the distracted drivers who don’t look, stop, or yield for pedestrians or bikers, the constant stench of exhaust and impatience.
Now, I sprint, sucking in deep gulps of predawn quiet. I wish I could run forever,
tear down the shoreline of Lake Washington and keep going. North, south, it doesn’t matter. But my breathing is off, my phototested butt is aching, and my sneakered feet feel claustrophobic on these smooth, urban flats. So I slow to a walk, promising myself that this weekend I’ll hit the dirt trails—Tiger Mountain or Cougar Mountain. No matter what, I can be on a trail at dawn when only a mere hint of light edges the horizon. Who cares if a woman was tasered on Tiger Mountain a few weeks ago? I press down on my heaving chest.
Why do I sound like just the sort of person I despise, all enthusiasm and promises but no intention of keeping my word?
I head to the tiny lakefront park and plant myself on the lonely swing. My legs pump, pulling higher to the purple-bruised sky. My toes tease the vanishing stars. Somewhere beyond the horizon, the sun lurks, ready to singe everything else I love and want: my summer tank tops and denim shorts, running on trails with the sun warming my face, desert oases I’ve only seen from my computer.
With a deep inhale, I bottle the outdoors, a perfume called Freedom and Future. No matter how long I hold my breath, I must exhale. When I do, it feels like good-bye.
My bedroom window has been closed, cardboarded, and relocked, which can only mean one thing: My parents know I’ve snuck out. Still hoping to slip inside undetected and unlectured, I skulk around to try the back door on the off chance that my parents might possibly be conspiring over some crisis or another in their backyard office, a souped-up garden shed with electricity and heat. The back door, sadly, is dead bolted against my plan, but does nothing to muffle Mom’s worry. From inside the house, I can hear her, agitated: “Where is she?”
Not good.
At the kitchen window, I spy my parents in the living room, waiting for the prodigal daughter’s return.
Great, just great. Right as I’m gearing up to face my parents, Roz’s window creaks open. She hisses, “Hurry up.” Gratefully, I haul myself up to her windowsill and drop inside Roz’s bedroom to her scoff: “Don’t you know to unlock the back door first? Just in case?”
“How do you know that?”
“Always have an Option B. Don’t you ever listen?” (Idiot.)
I shake off my little sister’s derision, but get immobilized in the hall when I hear tears clogging Mom’s voice: “I should be there with her, wherever she is, helping her process all of this. I should always be there with her. That’s my job.” Her deep, rattling sigh makes me feel guilty now. “I’m just like Samantha, a leaver. I’m an abandoner!”
“Sweetheart, you’re not like your sister at all,” Dad tells her, and I creep down the hall to see Dad in the living room, enfolding Mom in his embrace. “You haven’t abandoned her to fend for herself with alcoholic parents. And you’re not abandoning her now. We will never abandon her.”
“It was so scary being left behind. I hated feeling helpless and alone. Hated it.”
What I hate is how I can hear the scared twelve-year-old girl in Mom’s voice. Like Dad, she hardly talks about her life before us, even more rarely than she drinks, which is next to never. Not so much as a sip of cooking wine. All I know is that my aunt Samantha up and left at sixteen and never checked in on Mom—not a single call, not even a one-line postcard. And then fifteen years later, when Mom and Dad started Lee & Li before they even got married, there she was, asking for a small loan to help her out.
So I announce loudly, “I’m home.”
Mom wrests out of Dad’s arms and rushes me like she’s been training with the Seahawks. “Honey! You can’t just be going outside.”
I back away and point to the skylights in the kitchen. “Mom. Big, scary risk. It’s still dark.”
“What if you fell and no one saw and then the sun rose and you were stuck outside? In the sun?”
“I’m wearing sun-gear from head to toe, even though it’s basically pitch black.” I stretch out my arms, body fully encased in UPF-protective and reflective running gear. “Moonlight doesn’t emit UV rays.”
“The moon reflects them. We don’t know if you’ll get a moonburn,” Mom says.
Is there even such a thing? I take a deep breath to calm myself. It’s futile to fight their superior research and data. The lightning speed of their mandates for my life has caught me off guard. Rookie mistake, when I know my parents pivot better than quarterbacks with every new circumstance.
Mom’s voice goes high-pitched. “Do you know that you could die? Really die?”
“Instead of sort of die?” I ask lightly. Behind me, Roz and Dad chuckle, all of us trying to defuse the tension.
Mistake. Big, huge mistake.
Mom’s eyebrows nearly spring off her forehead. “This isn’t funny. Do you really want to flush your life down the toilet because you went out for a run that burned your skin and then you died? Isn’t that a little selfish of you?”
Alarmed, Roz and I exchange a nervous look: Mom never loses her cool. She channels her anger into championship lecturing packaged as “strong recommendations” and “news you can use.”
“Honey.” Dad reaches for her hand and he starts to translate: “What your mom means is—”
Mom finishes, her voice back under tight control, “This could get worse.”
“It could,” I say quietly. “I know it could.”
“Death!” Mom cries.
“I know, Mom.” Of course I did. Uncle Amos died after a swift bout with cancer. While I didn’t collapse during soccer practice like Aneesh, I held vigils along with the rest of Liberty when our school hero had to have emergency heart surgery two autumns ago. My father may not have died of a stroke on a business trip or my mother committed suicide, all of which have happened to different people in my class since freshmen year, but I have experienced the impact of death.
“You can’t take any risks. Not anymore.” Mom’s eyes home in on my headlamp: Risk! Risk! Major risk! Horrified, she snatches the headlamp off my head, a crown of thorns she will not have me wear. “Light bulb, honey!” She shakes the headlamp. “Light! Bulb!”
“Mom, Crisis Management 101. Sheesh,” I say, rolling my eyes despite countless parental lectures about R-E-S-P-E-C-T. How about aiming some of that my way? Which propels me to rant myself: “Hey, you wouldn’t treat any of your clients this way. I’ve seen you with my own eyeballs over how many summers? You wouldn’t order CEOs around. You wouldn’t tell them what to do. You’re all about: We’re partners. We’re in this together. So how come you’re not asking me what I want to do?”
“Because.” Dad looks perplexed as if it’s perfectly acceptable—perfectly reasonable—to bubble-wrap me for the rest of my solar urticarial–impaired life. “You’re our daughter.”
“But I’m not two.” My voice raises three octaves, maybe four, sounding exactly like a toddler in a tantrum when I should be calm, cool, and crisis-containing. So much for that. This comes howling out: “Where are my clothes? I want my clothes back.”
“Viola,” Mom says softly as if my breakdown snaps her out of her fear and back to the safety of crisis management mode.
No, my parents are not going to legislate away any more of my freedom. Without another word, I temper-flounce into the bathroom I share with Roz and slam the door behind me. I flick on the lights, only the bulbs have now been downgraded to the lowest wattage possible, one that can cast shadows, not much more.
Fresh from my shower and safe in my new UPF-protective and boy-repellant outfit, the dutiful chauffeur is ready to transport the princess to the boathouse, but Dad raps on my bedroom door.
I sigh as I finish tucking my college essay for my meeting with my college counselor into my messenger bag. “Don’t you have someone else’s crisis to solve?”
“Well,” says Dad, widening the door while juggling a large box and thrusting a sheet of paper at me, “I thought maybe you could read the letter before your mom and I send it to the school.”
Conflicting emotions slow my response time: irritation that they went through with writing a letter, grudging astonishment that
they actually shared said letter with me.
Dad taps the box in his arms. “And this came for you yesterday. In the middle of everything, I forgot to give it to you after the doctor’s appointment. What’s Planet X?”
My heart quite literally leaps. All thoughts of proofing the ballistic letter are forgotten. Despite knowing a diversion when I’m on the receiving end of one, I hold out my hands. “Dad, give it to me.”
“And what”—Dad pauses theatrically as he holds the box above his head—“is Josh Taylor sending you?”
I lunge for the box, which entails a nonelegant hurdle and a near-stumble when I read the label for myself.
From: Josh Taylor of Planet X
To: Viola Li of the Spaceship SERENITY
Supreme Magnificent Executive Intern
c/o Lee & Li Communications
What the heck required a physical package and not, say, a triple text? Before I can find out, though, Dad sets the letter on my desk. He rubs his nose and says, “We’re trying, honey. We’re just worried.”
“I know, but this is my life.”
“I know.”
The door swings closed behind Dad. That gentle motion sets off the new, parent-approved night-light in the corner of the room. I draw to the vague suggestion of light, dropping to the floor with the box. Inside is a sheet of bright yellow paper, hand-lettered in black marker to look like a book cover.
(PHOTO)SENSITIVITY FOR DUMMIES
by Josh Taylor
“I highly doubt that any self-respecting superhero of any gender in this current millennium would travel 7.44 billion kilometers just to attract the attention of a being, vampire, human, or otherwise.”
–Viola Li
Supreme Magnificent Executive Intern, Lee & Li Communications
You got my attention.
And I hope to prove you wrong on one point.
Tomorrow, travel 2.3 miles to Ada’s Technical Books?
Underneath the dummied-up book cover is a khaki hat, the kind that Auntie Ruth wanted us to wear on our safari and I refused on the grounds of because. Now, unbelievably, I laugh and try on the hat. It’s a perfect fit, but there’s still no way I’m going out with him.